Ramblings of my life with autoimmune diseases

Ok, so it has been way too long since my last post, my apologies. Cuba was great although I didn’t get the relief I was hoping for. I loved the people, the culture, the history. I could easily make this a winter getaway every year if I could afford it! But … my aches and pain didn’t go away like they did in Mexico. Now, I have absolutely no idea why this was so. Maybe just time of year, disease progression, the ebb and flow of the North Atlantic Ocean …

I know a few people who go to Cuba at least once a year, and they do seem to get some relief from the warmer climate. I think I will have to try at least one more visit before I write it off as a winter retreat. It would be interesting to know where other folks go to get away from the cold. Mexico for sure, probably Florida, Arizona has hot, dry heat, California?

Anyways, I wanted to get a little update here so I could start moaning about what has been plaguing me for a while now. The big “F” … yes, that’s right! FATIGUE!!

Took an hour but I was finally able to get into my website to add Ramble #2 … sigh. I have been feeling pretty crappy for at least a month now. The snow has finally all gone and I’m looking forward to warmer days. Plus, I’m going to Cuba for a week on Sunday. I can’t wait!

Ouch!

My right thumb doesn’t appear to want to work today and its very painful. Strap that thumb brace on. It seems like each day brings one joint that is acting up and more painful than the other joints. It really makes no sense and is impossible for me to find any sort of cause or pattern. I find it very frustrating and find that my anger at being sick is on the rise.

Next month I’m suppose to start on a biologic. We’ll see … I had to get a chest x-ray, which I’ve done and a blood test that I can’t seem to find a lab that does this specific test -QuantiFERON. This is because I always test positive when they do a TB skin test, even though I’ve never had it. My mom is the same, weird.

My ten week yoga program is over and I am funnily enough going to miss it. It really was a great program and much needed as there is a waiting list to get in. I had to wait four months! It is specially designed for people who have chronic conditions. I have signed up for the program in the fall as the shoulder seasons seem to affect me more and cause my activity level to go way down.

I am still trying to get this website/blog up and running smoothly. My apologies! I had a website years ago but never had any trouble with it. I have switched to a new hosting provider but still have a few kinks to work out!! Fingers crossed!

This post has no specific topic. It’s just a rambling of my thoughts and activities thus far today.
I slept ok but had lots of foot and leg cramps. Note to self – increase magnesium. I knit 2 rounds of a sock; new activity I’ve picked up as exercise for my hands and to pass time. I am really enjoying it!
I had a shower and now feel totally exhausted. It had been 5 days since my last one and I thought I’d better get to it unless I want to live alone‼ Hahahaha. So that’s done.
Chores I’d like to get done today are: dishes, fill out insurance forms and send off medication receipts for reimbursement, oh yeah, make something to eat. I often forget that one. Sounds easy, right? Half hour to an hour and all done, easy peasy.
Sadly, not so. All of these tasks involve my hands which are an ugly painful mess at the moment. They also require some energy. Why is there no pill for that?
I never realized how much a person uses their hands until I couldn’t anymore! One of my first symptoms was Raynaud’s and the second was a golf ball sized lump on both wrists! Talk about pain! At the beginning, pulling up my pants was torture, had to switch to sweat pants. No tying of shoes or pulling them on; slippers have become my new best friend and I wear them everywhere. Certain bathroom routines became so painful I actually limited myself‼ I can’t believe it‼
Today, although the lumps have gone down, I still have severe Raynaud’s and very sore joints in both hands and wrists. A new difficulty to add to this mix is skin tightening on both hands but more the left. I have cuts on both hands where I think the skin was stretched so tight that it has started splitting open. About 2 months ago, I had a digital ulcer on one finger. My AMAZING GP gave me 2 medications to deal with it and thankfully it cleared up‼
So … the few things that I want to get done today will take me hours, possibly the whole day, to complete. I will do a little, have a rest or even a nap, then back again. The cycle continues until I’m too exhausted to do anything and then I’m in my chair for the count!
AND … the insurance forms. It is very difficult for me to write as my fingers can’t grasp the pen right and it hurts! Anyway, they want an update, every 3 months, on my conditions. What?! I wonder what part of permanently disabled they didn’t get? They know I have medically retired from work and was found to be permanently disabled by Health Canada. Have I resumed working? Retraining? No, how about volunteering? When did I last see my doctor? Which one I wonder?! I know, I know they are just doing their job but it irks me – a constant reminder – psst you are never going back to work or your once normal life‼
Thank you, rant over and I feel a little better.

The answer seems fairly obvious. I use to hop out of bed, put the coffee on, jump into the shower, get ready for work and then off I went. I never gave it a second thought.

Today, I don’t hop or jump anywhere, I no longer work, and yes, to bathe or not to bathe requires much thought, consideration and compromise. If you have never heard of or read The Spoon Theory, read it here. Bathing requires many, many spoons for me.

Not only do I have the pain and restrictions from RA, but I also have skin tightening and itching from Scleroderma. Both are aggravated by water! So, it comes down to whether or not I think I’m smelly and dirty – of course I’m not!! I do change my clothes and still wash the obvious areas. I actually have about 2-3 showers/baths a week and I think that I’m doing well. The energy it takes to undress, bathe, sometimes shave, dry, lotion, dress, hair etc is sometimes all I can do in a day. Sad maybe, but I prefer to spend my energy doing things that give me a least a bit of joy.

When I have doctors appointments, yoga , or social get togethers, I bathe. Sometimes I resent feeling that I have to. To have a shower and go to the doctor will wipe me out for the whole day and often longer. The exception to this is if I have a long, hot bath with epsom salts. I crawl up and out of the bath (literally), put Tiger Balm on every joint and recline in my chair with heating pads. It feels great!!

I have added a new page to this site – Project Scleroderma. This non-profit is very dear to my heart, hence why I became a member of the Project Scleroderma Awareness Committee. Their mission statement is:

“…together we will raise global awareness, encourage support of research, and serve as a platform for patients to voice their stories and champion their cause”

I am passionate about supporting this group as one of their main goals is to simply raise awareness of Scleroderma. When I was first diagnosed, I had never heard of the disease. In the years that have followed, I am continually shocked at how little is known; both in general, and also by the medical community. I would be grateful if you would take the time to visit my new page, and then watch the short videos or visit the Project Scleroderma website

I love it!

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About me

Hi! My name is Alison - a 49 year old with Scleroderma (Limited Systemic Sclerosis) and Rheumatoid Arthritis. I was diagnosed 3 years ago, both at the same time. I had to medically retire from work and was found to be 'permanently disabled'. A new journey begins.